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amyloidosis

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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Vyndaqel

Vyndaqel

Currently, I am in the early stages of wild type ATTR. What is your advice on this drug?

A MyAmyloidosisTeam Member said:

Well you are lucky to be around and answering our e mails. So thank goodness for that. what were your symptoms when 1st diagnosed and when?

posted 24 days ago

Covid 4th Shot

Covid 4th Shot

I am seeing people recommending a 4th shot - Has anyone else hearing this and what do you think?

A MyAmyloidosisTeam Member said:

I get weekly immune therapy thus I’m pretty protected. But still am very cautious. I do have 2 Pfizer shots (made no antibodies) they come weekly in HIZENTRA!

posted 5 months ago

Anyone On Vyndamax 61 Mg?

Anyone On Vyndamax 61 Mg?

How long? What was the benchmark? Have you been retested to see your effectiveness of this drug?

A MyAmyloidosisTeam Member said:

Galparrott I have seen you mention that you have wild type TTR. Tegsedi is designed to stop the progression of the polyneuropathy associated with hATTR. I do know several patients that are now on both… read more

posted 12 months ago

Can It Be Detected In An Echo Cardio Gram?

Can It Be Detected In An Echo Cardio Gram?

A MyAmyloidosisTeam Member said:

I had the definitive scan called a Cardiac PYP. You’ll probably have to get this at a hospital. Look it up then discuss w cardio!

posted about 1 year ago

Does Anyone Else Have Balance Issues?

Does Anyone Else Have Balance Issues?

My husband who was diagnosed about a year ago, but who has had symptoms of CATTR for +12years has severe balance issues. Originally they were blamed on vestibular neuritis, but seem to worsen ever more frequently with "bouts" of imbalance and falls. Sometimes there is LOC, other times he is just soooo tired that he falls down. Drs seem to just shake their heads and seem to imply it is a separate issue
Has anyone else ever had inner ear nerve damage attributed to the amyloidosis?

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